Some life-sustaining therapies are harder to find, and widespread illness among caregivers is on the horizon, says expert on children with disabilities

“Many of these children rely on an array of home nurses, but what happens when these nurses get sick with the virus, which many of them will? ”

Dennis Z. Kuo, MD, Associate professor, Department of Pediatrics

Jacobs School of Medicine and Biomedical Sciences

BUFFALO, N.Y. – Health officials around the world agree that the vast majority of children have avoided the global scourge of COVID-19. But the pandemic’s social and economic consequences have already begun to affect the most vulnerable children, those with disabilities.

A University at Buffalo pediatrician who specializes in children with special health needs says that as COVID-19 spreads throughout the U.S. and social distancing and school closures begin, families of children with special needs are already experiencing the consequences.

“These families are really concerned,” said Dennis Z. Kuo, MD, associate professor of pediatrics in the Jacobs School of Medicine and Biomedical Sciences at UB. “What I’m hearing from them is that as we shut down the country and close schools, kids may lose access to therapies and counseling, which they would normally get through school.”

Kuo is medical director of primary care services at the John R. Oishei Children’s Hospital and a physician with UBMD Pediatrics.

Some critical supplies are growing scarce

“We’re finding, for example, that some specialized feeding formulas that are needed by children who get fed through feeding tubes may be difficult to find because of hoarding,” he said. “We are having to switch their formulas. We were seeing this even before the country started shutting down.”

There are also reports that inhalers are increasingly difficult to obtain.

Children who rely on feeding tubes cannot safely swallow food either due to a congenital condition, blockage in the esophagus or a developmental delay.

Every community has a significant number of children who live at home, Kuo said, in an environment that almost mimics an intensive care unit, thanks to a wealth of sophisticated technologies. These may include feeding tubes, home ventilators and tracheostomy tubes.

One of the most ominous consequences of this pandemic, he said, will be that many trained, round-the-clock caregivers will get sick.

“Many of these children rely on an array of home nurses, but what happens when these nurses get sick with the virus, which many of them will?” Kuo said.

Kuo described a cascade of difficulties stemming from the shutdowns of schools and some pediatric clinics, as well as the fact that the income that families depend on may be in jeopardy with so many people laid off.

What canparents do?

Kuo and his colleagues who treat children with disabilities emphasize that families should make sure they have medications and supplies on hand; they also need to find pharmacies that deliver.

“Most important, they need to make plans for alternate caregivers,” said Kuo, “because many caregivers will probably get sick at some point.”

Many clinics are starting to see children only for non-routine reasons. If children do need to go into a clinic, Kuo said, parents should plan ahead.

“They can work through the physician’s office with case managers to discuss needs and services,” he said, adding that physician practices need to do the outreach to patients and families.

“Not every child has to be seen,” he said. “As we go forward, we will see fewer kids in clinic and that’s appropriate, doing telemedicine and being selective.

“If the child needs to go to the clinic, they need to plan how that visit is going to go,” said Kuo. “It’s about planning the entire visit, from talking with front desk staff who schedule the appointment, to the nurse who does triage to the person who rooms the patient.

“I don’t want that child sitting in the waiting room too long. Get them into an exam room and if the child is sick they should be isolated. We are working really hard to not expose a child to any illness.”